Since this has all happened I requested A SAR of hospital files and OMG I really need worked with in what I see from 2013 day on diagnosis officially for MS. A day prior I had a operation done before and on the clinical notes it said appeared not coping with MS diagnosis and depression? The word functional again appears days after this needed surgery between this I was not diagnosed with an organic illness feeling relief that finally 13 years of hell had answers for me.
October 2013 I again had another emergency operation where this time I suffered some left sided paralysis that my vision on left was effected but the critical part I could not move my leg or throw it over to move me about the bed.
I literally was stuck in the one spot and could not move. An emergency CT SCAN was ordered and reported a large ill defined bilateral sign on it. before the CT was done the ward F2 already administered the anti clotting injections they give you in hospital for those not moving much already before scan. In his notes he firstly wrote CVA? or MS relapse?
CT SCAN
NB! This is a noted change from a previously authorised report. that was top line
??? is it an a Artifact this needed correlation with a neurologist and follow up required it stated. previous demyelinating illness cannot be ruled out.
Can anyone explain why this emergency CT does not appear on my discharge letter for this time period? Why no mention of CT scan ever appears in any further records between MRIs and consultants in any hospital?
It seems it got washed out of my record purposefully on discharge, leading my GP’s to believe everything went well for me in hospital when it didn’t. Why did the following MRI mention this as being part of my original diagnosis MRI done in early 2013? This was included into the 2014 MRI by a consultant who dropped the words functional into a internal letter and his report written well after discharge… But in-between my hospital appointment in 2014 after new neurological decline is it related to October 2013 to may were I fell asleep without warning including while driving. No warnings or anything’s I ended up readmitted to hospital due to these events by a different Neurologist from MS nurses service 2014. while in hospital the neurologist in this hospital ordered a EEG of my brain and it reported by EEG technician it looked like I was sleeping at times and I found it hard to stay awake for this test. slow brain activity was noted for someone sleeping not for someone at 3 pm in afternoon. This neurologist when the MRI was again completed by MS neurologist now on leave at time this first neurologist wrote the MRI report and in the internal letter to neurological ward. They said further to conversation with EEG technician it indeed looked like it was functional and related to sleep and medication.
This was after this technical data was signed off on by their boss early may 2014 on day of discharge. she only mentioned in facts that it was hard to keep me awake as I was sleeping at times for test. That’s all she reported on file.
This Neurologist used this EEG technician to drop functional into this internal letter and no other place does he mention it to another consultant, other than Neurology ward. He dropped it on a Consultant that already discharged me now 11 days prior. So how could he fix what was said was untruthful in nature and used a technician only there to gather data to say she said the words functional looking after her boss also singed off already to my GP. so wto consultants and a technician are now wrapped into this functional term for an already evolving organic illness. This took another two and a 1/2 year to diagnose a new neurological illness and cause for this excessive sleepiness.
Is this systemic Governance or criminal failures of medical record keeping that no one seems to know happened from this 2014 date either. I feel awful knowing what I see is blaming another person for their original failures too map out MS that got worse due to the unfollowed CT October 2013 SCAN? This is only the start I believe my regional services also are unaware of what happened here in my local hospital. Leaving out a CT scan from discharge is a breech of clear record keeping and Good Governance for my GP‘s as primary care facilitators? My Neurologists in future care post 2014 have failed to callout harm done that now effects so many people from the way they wrote the letter after all reporting was done and sent to GPs already?
Anyone any idea how to approach this horrendous care?
I have been left with permanent leg weakness on left since this screw up of care. Event a Expert witness has said my care wa ok while leaving out every major incident in my care records he accessed protecting the profession not his duty to the courts for justice I’m trying to get for everyone in same boat as myself! We are all brothers and sisters sharing the same illness and same clinical and systemic Neurological failures daily we all read about.
Mine is one of thousands I have read and sympathy with you on your care or should I say lack of also?
Can anyone see how this serious event gott dowwnplayed and vanished from record? As all scans and reports need seperated by time aaand space to keep your new and old events seperate. But after 2014 MRI these events are downplayed and rolled back to my only MRI on record from April 2013. None exists of previous MRI abnormality on file with this Neuro Physio letter also going missing as well as many notes from clinics I attended.
Should I report this serious omission of letter and scan to GP practice to see what they say or do about it?
Could I ask my current Neurologist who is an extremely intelligent woman who has written and published papers on the difference in what a radiologist sees compared to a Neuroradiologist is around 40 % from what I remember off hand difference in what they pick up. That is like night and day in terms of who reads your scans makes a difference.
Or do I ask for regional MS consultant please help me and review my file to help understand the failures that happened locally never should have?
Pointing out the key dates I’ve sound so far? Just what do I do the most recent failure is not telling me I have Macular changes to my eye for nearly two years leading to damage to my eyes after my regional local MS neurologist wrote to to local hospital telling them I needed seen, due to scans being abnormal from local optometrist back in 2013.
They seen me in 2024 and never told me macular changes were happening. Only last year in October did I notice lines did not look straight, and a black circle could be seen when I looked at red colours. Twice I had to chase this appointment in this year 2026 after referral was sent as urgent twice.
The Consultant ophthalmologist told me I have wet age macular degeneration in eye and I needed aggressive treatment for this starting today in clinic, when I seen him January this year. This I did not expect and had I known what it was I never would have went through it at time if I got to look it up. Dr google worst person to look to I promise you that, when the pain is unreal in a 11 out of 10 that night.
To go through it was a nervous experience I have to say but if you want to read you need to go through it anyone else in same place please do. I value my sight for everything I need to have some control.
Now I’ve had my second injection and it was nowhere anywhere as bad as first time. The reason is it is stopping the retina bleed at back of eye also and improvement in what I could read was already seen, is first good news in years with this illnesses hanging around me I needed. The injection is weird but not difficult at time it’s the after is problem with NHS just able to give natural tears made it worse.
Anyone needing this done go to optometrist and buy a product called (HYCOSAN INTENSE) This is a german product made by SCOPE part of the HYLO family of products. The other one I can’t find just now for post surgical operations is absolutely brilliant in reducing the issue of pain, making you able to get on with your day normally with sunglasses, also I recommend if wanting to watch TV or read that day. This went from a 10/10 down to a 2/10 that is such a drop now making me more comfortable for future injections.
You do not feel anything at all I can promise you that only a slight pressure for a few seconds only. Anyone with this condition please don’t neglect and to find out if you have macular issue go to macular society website or print of Amsler grid and yo know. If you have an eye issue as it will go distorted when looking at black dot on the Grid layout .This will be not straight lines at reading distance. I’ve now both wAMD and left peripheral vision loss on the same eye leaving me with awful ight from a hospital losing my notes. Now left with severe sight issues at a young age. So please always get your sight checked those of us with MS in all forms.